HER2+ invasive Lobular Cancer

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Hello everyone. This week I’ve been diagnosed with grade 2 Invasive lobular HER2 positive cancer. Wow, what a difficult thing to be told at 43, well - at any age! I have so many feelings which only people going through this will understand. I’m going for an MRi to understand if there are any areas other than the 3 tumours in my left breast. Worrying times! 

I would love to find support and be supportive to others along their treatment plan and if anyone has similar experiences to share, I would find that comforting. Thank you

  • Hi I'm also 43 and was diagnosed with grade 2 invasive ductal HER2 positive breast cancer in June. Yes it is a worrying time and all the  more so when you are our age which is young to be getting breast cancer. However, we're also young enough for the NHS to throw everything they have at it, so I was reassured when I saw the list of treatments they can use. I had an MRI too, they're a bit claustrophobic but not too bad. anyway I hope that's been of any help, it's a rubbish thing to happen but at least we can try and support each other.

  • Ah, thank you for sharing and thank you for the reassurance about the NHS too. In my experience, they have been great so far. What is your treatment plan if I can ask? 

  • so far I have had two surgeries. wide local excision and sentinel node biopsy was the first one and then they needed to take more tissue and remove all my lymph nodes. I'm having chemo right now and after that will be targeted therapy and possibly radio and hormone therapy. 

  • Wishing you all the best with chemo and hope the treatment is kind to you! 
    the HER2 positive element changes the usual treatment (so I am told). Are you feeling ok within yourself? 

  • Hi there, Im 47! and in May I was Initially diagnosed with LCIS and this was after many biopsies and an MRI. It was a large area so I had a mastectomy and sentinel node biopsy, then received the pathology results and they found an area of Grade 3 invasive lobular, HER2 positive, node negative (this was a huge shock) which meant 6 rounds of chemo (doxcetaxel and carboplatin) and herceptin for 1 year. With it being HER2 positive I think chemo is generally always offered. I'm about to have my last chemo it will then be radiotherapy. I'll have zoladex injections to causes early menopause, hormone drugs for 5/10 years....the list goes on! As I think someone previously said they will throw everything they can at you, even in the last few years so many new drugs have appeared....

    I hope this helps and I'm really sorry that you are also going through this. Any questions you might have do ask away.

    Xx

  • Yes I feel Ok physically thanks for asking. They give you chemo if its HER2 positive to stop the cancer from coming back, what they call adjuvant chemo. 

  • Wow, that must have been a huge shock and the treatment sounds like it will be on-going for a many number of years! 
    thankfully you’re coming to the end of your chemo as I’ve heard that’s the most taxing element on our bodies, apart from surgery that is. 
    it’s becoming more clear that treatment plans are completely individual and it seems can be ever-changing which is good for me to know as I need to prepare my mind for all that is ahead. 
    thank you so much for your reply and wishing you all the best x

  • The thought of going through what is essentially months to a year of treatment and it coming back really scares me! 
    Thank you for sharing x

  • yeah I feel the same so it's good to know there's things they can do